Appropriateness of Iron Infusion Treatment

[Obewan]

After weaning myself off dopamine agonist and not having any success with an alpha-2-delta ligand medication or a low dosage of an opioid, my primary doctor, along with a hematologist in his clinic, have agreed to go forward with an iron infusion treatment. The one issue that concerns me is that my serum ferritin level is over 100, with one reading two months ago at 173 and another last week (non-fasting) of 261. My primary doctor discussed this with the hematologist and they still agree that I can move forward with the iron infusion treatment, but that the two infusions should be more than a week apart and my blood level should be checked between the two. The January 2018 Elsevier paper, as well as Dr. Earley's RLS webinar on Iron and RlS, both indicate that your ferritin level needs to be below 100 to be a candidate for this treatment approach. My question is whether anyone is aware of iron infusion being safe for a someone whose ferritin levels are as high as mine?

[ViewsAskew]

Hi Obewan. I wish I knew. I think badnights just had one - her first - and her ferritin was higher than 100.

[stjohnh]

Obewan, I'm glad you are getting iron infusions, although I am worried you will be getting a sub-optimal dose. The guidelines say that initial infusions should be limited to those with a max ferritin of 100, but that subsequent infusions are fine with ferritins up to 300. Several factors may have influenced your doctor's recommendations, especially the results of other iron tests, especially the % Transferrin Saturation.

The current guidelines are VERY conservative in their recommendations r.e. ferritin. There are couple of historical medical reasons for that, but primarily due to the original IV Iron preparation have occasional serious allergic (and fatal) side effects, but NOT from too much iron. As a result, medical students, especially those doctors who are now in their 40s, 50s and 60s, were taught to avoid IV Iron. So they do.

The guidelines are based on available EVIDENCE, not theory, and because of the worries above, there haven't been studies done on giving RLS patients IV Iron outside of the guidelines. Iron damage from hemochromatosis comes from years of excessive iron, those people generally have a ferritin of over 1000 ALL the time.

In short, don't worry about too much iron. I am worried that your docs won't give you the necessary amount because of the ferritin check between the two doses. It is nearly guaranteed to be over 1000 unless many weeks have gone by since the previous iron injection. My ferritin, 8 weeks after my second infusion was over 700, which is normal for the type of IV Iron (Injectafer) I was given.